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The Space Between

If you ever meet Nolan and spend more than 15 minutes with him, you’ll know that there are things that he likes, and then there are things he is obsessed with.  Paw Patrol? Oh he likes Paw Patrol…sometimes a little, sometimes a lot.  ABCs? OH. MY. GOD. It’s his favorite thing on the entire planet earth.  He’ll watch alphabet videos on YouTube for hours, his favorite toys are alphabet-related, etc.  He’s crazy about it.  Then came numbers. Of course, we can’t forget his best friend Monkey.  Now there’s something else to add to it: jumping.  This kid loves to jump and it seems like lately that’s what he likes to do: he jumps on each letter of his alphabet mat (because of course), he jumps whenever I’m holding his hand and we’re walking somewhere, and he even jumps when he’s happy about something. Example: I’ll ask Nolan if he wants to watch Paw Patrol – he’ll squat down low and spring up into a jump saying “YES!” He especially loves jumping on trampolines:

NolanTrampolineLook at that kid catching some air!

I love it, though…he’s super cute when he jumps.  We recently found someone nearby who was giving away a 7-foot trampoline so I picked it up and put it in the back yard and it was like Christmas for Nolan.  He can jump on it all day (of course he goes through his alphabet forwards and backwards and counts to 100 while jumping)…and he won’t get out of it without a fight.

Now Nolan isn’t getting some kind of crazy vertical on his jumps, but watching him jump even a little bit off the ground really struck me as symbolic.  Maybe the space between his feet and the ground is only 6 inches or so, but that space speaks to years of hard work at physical and occupational therapy.

I remember the early days of Nolan struggling to sit up on his own, then trying to crawl.  The crawling was so hard: he’d cry and scream and it was so tough to see him that way, especially with all he’d been through.  But eventually he crawled, then he stood, then he walked.  Since then Nolan has progressed to going up and down stairs and, yes, jumping.  Lots and lots of jumping.

And when he jumps, the space between his feet and the ground brings a smile to my face. I like the space between: it’s a good reminder of a little boy who faced major odds and kicked some butt. I think sometimes we (myself included) as heart parents get caught up in the what might happen part of our journey. Will there be a transplant down the road? More surgeries? Will the liver be ok? And we worry ourselves sick.  Sometimes we need to hang out for awhile in the space between.  Or at least admire the space between and what it represents.

For you, the space between might be one less medication, it might be one less surgery, it might be a clean echo or cath, it might be your baby finally talking or walking…it might be a little boy jumping with all the joy in his heart.  Whatever it is, please take time to appreciate the space between.  I’m not saying don’t worry about anything…we’re always going to worry…but instead look for the little symbols of victory in your heart warrior’s life.  They can be so easy to miss, but so powerful once we see them for what they are. For your own sake and your own mental health, give yourself permission to see and celebrate the little wins.  And by all means, celebrate your warrior for his or her victory over that thing that’s trying to hold them back: tell them you’re proud and let them feel free to smile, or even…jump.

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The Intersection

intersection

Every hospital has The Intersection.  Every heart parent has stood at The Intersection.  This is the place where it all becomes real, where it’s go-time, where you whisper that last fervent prayer before letting go.  You woke up early to come to the hospital for a surgery date you’ve been dreading, you’re ushered up to a pre-op room where people come to get you to sign here, initial here.  Maybe you review some last-minute information and meet the surgery and anesthesia team.  But eventually the moment comes where you enter The Intersection.  At our hospital, you step out of the room and into the hall where it forms a T: this is the place where a group of people (and your child) turn right while you have to let go and turn left towards the waiting area.

The Intersection is a heavy, heavy place.  It’s the place where fear and doubt seem the strongest and where you muster every last bit of hope left in your body and try to project it on the people turning right.  For a brief moment all those thoughts cross through your mind: did I pray hard enough, have I been good enough, have I been a good parent, did I give enough hugs, was this the right choice, are you sure it couldn’t just be me instead of him?  It’s such a tough place because to turn right is handing your child over to certain fear and pain, which is necessary to live.  To turn right is to be filled with fear and tears.

I don’t write this to merely drum up our old fears, but rather I spell them out for a different reason: to thank a group that I think often goes overlooked.  A couple months ago I was asked to share Nolan’s story with our surgical services team at work.  This was a massive group of nearly 200 people all in their green scrubs and funny giant shower cap thingies.  They have their staff meetings at like 6am, which is bonkers, but I digress.  As I walked to the auditorium, I was thinking in my mind what to say and this idea of The Intersection hit me like a ton of bricks and I just had to share it.  So I shared Nolan’s story and at the very end I said to them, and I’m paraphrasing here:

“There’s a place I call The Intersection.  Where Nolan goes one way and I can’t follow, so I have to go the other.  This is a really tough place to be because I know where he goes there is pain, and where I go there are tears. But as I stand here in front of you I want to thank you, because when he makes that right turn I’m essentially handing him over to you…the people I don’t even see…to save his life.  And without you, there is no Nolan, so I thank you.”

I gotta tell you, it took everything in my power for me not to lose it there.  Not to mention it was 6am so I was already a wreck as it was.  But I meant it.  You see, while our amazing surgeons make the news and magazine covers and whatnot, there’s a whole team of people behind those operating room doors who we will never see or meet.  They keep things clean, keep things stocked, keep things moving smoothly and Lord knows what else they do.  They are so important to the success of these surgeries and I’m not sure they get the recognition they deserve.

So while I know it’s painful to think about The Intersection, remember that it’s Thanksgiving week: let’s channel those thoughts into some genuine thanks for the surgical services teams who have played such an under-the-radar role in the success of our kids.  I encourage you to share this post on social media, maybe write a card or note to the surgical services team at your local children’s hospital.  Whatever it is, just make sure you let them know how much you appreciate that they’re there on the other side of The Intersection.

If you’re reading this and you’re part of the team who wears the green scrubs and the funny shower caps: just know that our family thanks you for your hard work.  Let this recognition encourage you and your teammates to know you are loved and appreciated for your work…keep it up!

Thankfulness pt. 2: My Family

This is the second entry in a series about thankfulness.

What would I do without my family?  We’re like a basketball team…but with only one tall player.  And I love them all.  Today’s post is a big thank-you to the rest of my family:

Hudson

CoolDude

Oh this kid.  My oldest and most hilarious.  I can’t believe how big he’s getting!  He’s figuring out this whole big brother thing, but he’s showing glimpses of absolutely adoring his brothers, even though he gets annoyed when they steal his stuff.  Such will be our life for MANY years to come.  I really enjoy watching him grow and all the things he’s learning.  And I just believe how hilarious he is, whether it’s his insanely imaginative imagination or him replacing “It’s Time to Dance” from Yo Gabba Gabba with “It’s Time to Fart.”  Hudson is also a wealth of safety advice like “Don’t stand next to a volcano.”  He’s so loving and smart and he taught me how to be a dad, and I just love him so much.

Grant

GrantPantsHead

Nolan’s twin brother and technically the youngest of the 3 boys (by 2 minutes!).  He is a funny little ball of craziness, who loves to dance and wear other people’s shoes around the house.  Since he’s been in preschool this year we’ve discovered that he really likes art…loves to paint and color…so maybe we have a little artist in the house?  I love to hear his “Hi Dada” when I get home from work and I laugh when he wants to roughhouse in the living room.  His laugh is just the best.  The one thing I absolutely love about Grant is that while a lot of the time he wants to steal Nolan’s toys or be a brute, he will always want to share with his twin brother.  If we give grant a cookie, for example, he will immediately go take it to Nolan then come back for one for himself.  If only the world were so giving.

My Wife

Married

This is the real MVP of our family and the love of my life.  She works hard wrangling three kids during the day, doing school pick up and drop-off, taking Nolan to appointments and therapies, and then works nights 4 nights a week.  She is the one who gets Nolan through all his therapies and encourages to do better, she’s the one who fights for Nolan to eat by mouth, she’s the one who keeps our household running smoothly.  Without her drive, Nolan would not have accomplished have the things he’s done so far in his life.  Plus she puts up with a household of crazy males!  I can’t imagine living this life without my amazing teammate, and I love every moment with her.  Thanks for being awesome, babe!

Man, I love my family…my little traveling circus…my band of crazies…I just love them all.  I love that they make me laugh and smile and keep me sane.  I’m so thankful for every one of them and for the joy they bring me every day!

Thankfulness pt. 1: Levine Children’s Hospital

We’re coming up on Thanksgiving and I like to use this time to reflect on the things I’m thankful for.  I’m trying really hard not to re-write the last Thanksgiving post I did.  So what I’ve decided to do is break up the things I’m thankful for into a series of posts (as of this writing, I haven’t decided how many).

Today I want to express for an important place in our lives: Levine Children’s Hospital.

LCH

I often joke with people that LCH is our home away from home, at least it was during Nolan’s first year of life, between 2 surgeries and the occasional admission.  Lately I’ve been reflecting a lot on LCH and how much it’s meant to us.  If you ever go there, it’s actually a pretty cool place: it’s bright, cheery and colorful with chairs in the lobby that look like bacon and lots of fun art throughout the building.  The staff is friendly and there’s even a radio station in the lobby where lots of well-known recording artists come to visit.  It’s a cool place, even though no one really wants to be there as a patient/family member.

We had so many staff members there who treated us and Nolan was so much dignity and kindness.  I will never forget nurses going above and beyond to ensure Nolan was so well cared-for: not just medically, but as a human being.  They would give us meal tickets daily to make sure we could get something to eat, they would stamp our parking passes so we didn’t have to pay for parking, the doctors would include us in daily rounds.  They answered my phone calls and my questions, whenever they were asked.  They held conversations when appropriate, and turned down the lights and let me sit quietly with Nolan on those evenings when I was just plain exhausted.  It is a special place and I can’t speak more highly about Levine Children’s Hospital.

I’m lucky now that I can work next door to LCH, so I’m in an out of there whenever I can, and I help them with whichever program I can.  I do that because I’m proud to be affiliated in any capacity with Levine Children’s Hospital, but I do it moreso because of all they did for us and for Nolan.  It’s my way to give back.  In fact, this Halloween I had the opportunity to participate in a Halloween Carnival at LCH where the patients and their families can come trick or treat right there in the hospital.  I was so on that, because I know what it’s like to be in the hospital during holidays (Christmas and New Years, in our case) and I know how surreal it makes things.  And I really appreciate how hard the LCH staff works to bring some normalcy to kids’ lives.  But I needed a costume because, I mean come on, it’s a kids hospital…you HAVE to dress up.  Then it occurred to me: I am going to dress up as Dr. Peeler, Nolan’s heart surgeon!  I got a picture, made a mask, got some surgical scrubs, and even had some help from a Nurse Practitioner in borrowing Dr. Peeler’s actual lab coat:

Peeler Costume

Yeah it was funny and a lot of the LCH staff were really tripped out by the Peeler look-alike.  It was fun, and I participated in the event for the kids and their families.  The costume was a silly way for me to thank Dr. Peeler for everything he does for heart kids and our Nolan in particular.  We are so dependent on his skills.  Again, thank you Dr. Peeler!

We’ve been really blessed to have seen Nolan making some really wonderful strides during the 2nd half of this year: walking, eating more by mouth, being more vocal, even starting preschool one day a week.  These are some major steps he’s taken to becoming all Nolan can be. When I lay Nolan down to sleep at night, I always try to take a moment to just watch him and take a moment to admire how far he’s come.  I just want to use this post to say thank you to the staff of Levine Children’s Hospital…keep on being the best.  Because every night I get to lay Nolan down for bed means one more day I got to spend with my wonderful son.  And we get that time with Nolan because of your work.  I know sometimes you get really tired and stressed and it can be emotionally taxing…but from the bottom of my heart I appreciate your work to give my son his life and to give us an opportunity to see him thrive.  That means so much to me and if I could I would walk the whole building to personally thank everyone who has worked with us for their smiles, empathy, professionalism…heck, even for the chocolate milk in the nourishment rooms (SO good).  Every moment we make with our son is because of the hard work the LCH staff put into him.

So this Thanksgiving…each and every day…whenever I lay this sweet boy to bed, I want to thank you…

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When Being Thankful Looks Different

I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog.  I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent.  Hopefully for those who have gone through it, this blog shows that you’re not alone. 

I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving.  Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc.  But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.

While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did.  In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared).  There are a lot of babies that are born with congenital heart defects who aren’t so lucky.  They’re born, look normal – just like Nolan – except they go home within a couple days.  And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky.  Many hospitals aren’t equipped to deal with CHD babies, much less recognize them.  Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU!  So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING. 

I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff.  For the bright colors and cheerful decor.  Trust me, when you spend 2 months daily in a place, you notice that kinda stuff.  I’m thankful for their volunteers, the doctors, the nurses, the CNAs.  I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day.  A Children’s Hospital is definitely not a place you want to be by choice.  We had to be there, and I honestly believe LCH is one of the best around. 

I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital.  She continues to be a rock and an amazing mom and wife.  When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis.  Those guys are cowards and they’re weak.  Nothing less.  I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.

Now for the crazy part.  In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort.  I have a job to do and that’s to be a great husband and an awesome dad.  Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective.  Nolan is surviving and thriving and I thank God every day for it!  There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home.  Perspective.  It’s a powerful thing, and I’m thankful for it.  I tell everyone that ever since Nolan was born, my life changed.  I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live.  And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.

Happy Thanksgiving Everyone!